- August 26, 2018 at 3:00 pm
Hi everyone!!! I was wondering how everyone feels about Nivo monthly versus every 2 weeks??? My son is currently on the every 2 week regime…he is doing pretty well. Minimal side effects, little tired and some occasional abdominal cramping. Our doctors discussed possibly switching to monthly at the 6 month mark. I know it’s double the dose then and i was just wondering if Anyone has done this and how they responded.
We are about 4 months in now. He just had his 7th treatment last Tuesday and then on Wednesday I dropped him off at college to start his freshman year. He plays college baseball and the practice schedule has been pretty intense the last few days and so far he is hanging in there and not having any issues. I was worried about it all catching up with him but so far so good!!!!
I will admit, I am struggling with him being away…he is only about 45 minutes away which is not horrible but not seeing him everyday to know he’s doing ok on treatment is going to be tough. The doctors gave him very specific instructions on what to watch for while he is away…..I guess letting go is just that much harder for me now that we have a melanoma diagnosis in the mix.
I want to try to keep his routine as normal as possible, especially with this being his first year of college…and monthly infusions would definitely be more convenient for his schedule…but I’m afraid to “rock the boat” so to speak…
- August 26, 2018 at 4:42 pm
Monthly Nivo wasn't an option yet when I was on it but I would have jumped on that boat. I was diagnosed in the middle of a college semester and started treatment, was on some form of treatment for 2 years while going to school and working part time. Monthly Nivo would have made that all much less stressful too. I did not have any real bad side effects from Nivo alone, just a few that were tolerable and easy to live with.
Wishing your son all the best.
- August 26, 2018 at 11:02 pm
Thanks Jenn!!! It will definitely be a better option to go monthly for his college schedule and mine because I have to go get him every 2 weeks for treatment. I will do whatever we have to do for however long we need to do it. Hoping we continue as we are with little side effects and that a transition to monthly goes well!!!!!
MelanomaMikeParticipantHi, thats a good question and now that i know theres an “option” for taking Opdivo either every 2 weeks or monthly, id probably choose monthly cuz im cutting out “one” co-pay to see my oncologist, we have it that i see her then do my infusions wich is 20 steps away from her office id rather pay once per month right!??!! Does the Onco/Pharm put more Opdivo in my bag then if it where every 2 weeks?
- August 26, 2018 at 10:13 pm
- August 26, 2018 at 10:58 pm
Hi mike!!! Yes it is a double dose from what i understand when you get it monthly instead of every 2 weeks….I agree that it’s much more convenient and definitely better to keep money in our pockets with all the copays!!! Lol!!! Hopefully someone will respond who has switched to monthly after the 2 week regime. Definitely talk to your oncologist about it…our oncology team wants us to wait until the 6 month mark but it can’t hurt to ask!!!! Let me know how you make out!!! Good luck!!
- August 27, 2018 at 2:58 pm
I was on NIVO every 2 weeks and switched to monthly 3 months ago (about 6 months in). I find it much easier to do – the infusion is also only 30 minutes v 60 minutes before. I even find that I 'forget' I am a 'patient' on 2 of the 4 weeks in the middle of cycle and my life is back to normal until I get notification of next infusion. For me, I think becasue I had already gotten past my fatigue issue of the first 6 months, i havent had any trouble adjusting to new larger dose. All positive from my perspective!
Good luck to your son!
- August 27, 2018 at 2:56 am
I’ve completed 4 monthly Opdivo infusions. I never had the 2week dose.
For me the biggest side effect has been a need to sleep much longer than normal during the first week after the infusion (days 3-8 after the infusion). It’s not a normal fatigue where I would need to rest but instead I go right into REM sleep whether I’m down for the night or taking a nap. 10+ hours per night and possibly a few naps. Otherwise the side effects are minimal.
If your son can get his 4 week infusions on a Wednesday and plan to rest through the weekend then the 4 week option might be great.
- August 27, 2018 at 3:28 pm
Thank you!!!! My son is a little tired he says but he is a teenager so it’s hard to tell if it’s the Nivo or the fact he stays up all hours!!! Lol!!! I’m hoping now that he is on school and has a full schedule he will be on a better sleep schedule all together!!!!!
- August 27, 2018 at 3:01 am
I started on July 30th with a 2 week dose. It went well. On August 13th I went with the 4 week dose. So far, I haven't noticed any difference in side effects (which for me were: a little more tired, and itchiness).
- August 29, 2018 at 6:49 am
I had my first double dose this past Friday. I slept a lot more the first few days but other than that I’m feeling fine so far. It will be very nice to not worry about it so often. It felt like I was constantly either recovering, or getting ready to go do it again! I’d definitely have your son give it a try. He can always go back to every 2 weeks if he doesn’t react well. Best of luck to him!
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